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Guidelines for women who were told to have endometriosis


I was told that I have endometriosis


Endometriosis Patient Guidelines

A laparoscopy has not yet been performed

  • de diagnosis is a suspicion of superficial endometriosis
  • If a cystic ovarian endometriosis was diagnosed by ultrasound or MRI  the diagnosis probably is correct, and surgery is needed
  • If pain started abruptly the probability of a cystic corpus luteum is high. In this case surgery is NOT indicated.
  • If a BIG deep endometriotic nodule is suspected based upon complaints, clinical exam, ultrasound (MRI), the diagnosis is probably correct ; for smaller lesions the risk of false positives and of false negatives is 20% to 30%
  • I you were was informed about the type of endometriosis your gynecologist probably is not a specialist and you probably have  superficial endometriosis

If a laparoscopy is planned: check

  • A cystic ovarian endometriosis of more than 6 cm needs surgery in 2 steps otherwise the ovary is functionally lost.
  • If a large deep endometriosis is suspected, hydronefrosis should be excluded  (e.g. with  ultrasound) while only a contrast enema can diagnose a bowel stenosis
  • An ureter stent is indicated only in cases of hydronefrosis
  • Check the level of expertise of the surgeon : for deep endometriosis level III is required. A bowel resection is rarely needed  (<10%) and should be decided during surgery. Too often bowel resections are performed almost systematically. Check the literature !

If a laparoscopy was performed without surgery

  • The diagnosis is probably correct
  • Check the photo’s or video to ascertain that all has been checked such as  appendix, the sigmoid and diaphragm
  • Do not blame the gynecologist: if lesions were unexpectedly severe and the surgeon has not the required level of expertise, it is better not to do surgery .

If surgery was performed you should know.

  • which type of intervention for which type of endometriosis  ?
  • complete or incomplete excision  ?
  • complications  ?
  • duration of surgery ?
  • video or at least photo-documentation ?
  • ovarian reserve

If medical treatment was given without a  laparoscopy, thus without a diagnosis


  • “I was told to have endometriosis” This is not a diagnosis without specifying the type of endometriosis. It certainly is not an argument to start medical treatment without a laparoscopy. Even if the pain improves medical therapy should not be continued for many years since severe endometriosis can progress during therapy.
  • I was told to have superficial endometriosis This diagnosis cannot be made without a laparoscopy. Occasionally some indurations can be felt in the uterosacral ligaments. Also ultrasound , MRI, Cat scan cannot make this diagnosis. If a laparoscopy was made  all superficial endometriosis should have been vaporised or excised so that there is no endometriosis any more.
  • I was told to have cystic ovarian endometriosis - chocolate cysts  The diagnosis was diagnosed by ultrasound ,eventually by MRI . The ultrasound diagnosis  is very accurate although it might be a corpus luteum if the onset of pain was acute. This is important since the first requires surgery, whereas the latter should not be operated.
    • What is important to check when surgery for cystic ovarian endometriosis is planned
    • After surgery, provided it is well done, you can expect
        • that the ovarian reserve will normal : a decreased ovarian reserve is generally a consequence of damage to the ovary by excessive coagulation or operating too large cysts. Occasionally the ovarian reserve will be slightly decreased : in order to permit to judge whether surgery was well done video registration is essential.
        • Pain should be cured
        • spontaneous fertility rate should be some 60 to 80% within one year.
        • Recurrence rate after stripping is some 5% .
      • If a pregnancy is not desired immediately after surgery it can be useful to give oral contraception.
    • IVF is proposed without surgery ?  I personally consider it a mistake to do IVF with a cystic ovarian endometriosis since oocyte pick up will spill chocolate all over the pelvis resulting in massive adhesions. In addition after ovarian punctures, multiple ovarian endometrioma’s can develop. All together this will result in a lower cumulative pregnancy rate in comparison with a sequential surgical therapy  followed by IVF if still necessary.
  • I am suspected to have or I have been diagnosed with deep endometriosis.
    • The diagnosis should have been suspected or made clinically (very severe pain, perineal radiation, visible in the fornix posterior, felt at exam). Whenever deep endometriosis is suspected, a contrast enema to diagnose eventual sigmoid endometriosis and an IVP to exclude an hydronephrosis are mandatory . The clinical use of MRI, Cat scan and colonoscopy is very limited. 
    • the surgeon should have the skills to treat the bowel, the bladder and the ureter. Without video-registration it is impossible to judge later whether surgery was complete or whether a debulking was done. alternatively, in the absence of the necessary skills of ureter surgery , a stent is often placed systematically in women without hydronefrosis , and when an hydronefrosis is present often ureter re-implantation is done instead of a ureter re anastomosis.
    • What can you expect after surgery Absence of pain in some 80% : since some 20% of women will still experience pain after surgery videoregistration is so important for further clinical management. Spontaneous fertility in some 60 to 80% within 1 year.
    • Complications of surgery Deep endometriosis is difficult and complication prone surgery .  The early complications of discoid resection and of bowel resection are similar, whereas late complications of bowel resections are much higher. Medical treatment  Is not really useful before surgery.
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